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Stage IV de novo are still on your first line of treatment?

Awheeler Member Posts: 2

Hi! I went to my oncologist today for my third round of chemotherapy taxol/herceptin/perjeta. My oncologist explained this is the first line of treatment and said it could be 6 months or 4-5 years before your cancer will return after chemo. I was just wondering how many of you are still on your first line of treatment and how long you have been.


  • sondraf
    sondraf Member Posts: 1,631

    Almost a year, but I know there are more on here with time in the 4+ range - hopefully they will post. Alternatively there is the specific de novo thread - you may capture a few more de novo specific ladies in there.

    You may also want to fill in your signature so people can get a look at what type of cancer and where its located.

  • olma61
    olma61 Member Posts: 1,026

    Three years and NED on Herceptin, Perjeta and Arimidex. I was de novo and did the six months of weekly Taxol initially, started the Arimidex after the Taxol.

  • FosterKittenMum
    FosterKittenMum Member Posts: 10

    Like Olga I am three years and NED on first line treatment. I did 14 weekly treatments of Taxol, Herceptin and Perjeta, the had to drop the Taxol due to a degree of peripheral neuropathy. I am now on ongoing 3 weekly Herceptin and Perjeta (infusion Number 52 ) and Xvega just changed from 6 weekly to 12 weekly. Also just started Anastrozole in May this year.

  • GlobalGal
    GlobalGal Member Posts: 29

    1 year and 4 months NED on first line treatment, Anastrozole (occult breast cancer, possibly lobular, found in central neck lymph nodes following surgery for papillary thyroid cancer).

  • hawkeye
    hawkeye Member Posts: 34

    Started with herceptin/perjeta/taxotere. Dropped all but herceptin. Going on year 7. I've been very, very fortunate

  • kbl
    kbl Member Posts: 2,792

    I have been on my first line of Ibrance/Letrozole since June of 2019. I was diagnosed de novo with no primary found. It's in my stomach and throughout my whole spine. Here is the kicker. It was a missed diagnosis, and I went six years with no treatment. It's been in my spine since 2013 but only found out the true answer on August 6th of this year. Also just started Zometa and have had two infusions so far.

  • Partyoffive
    Partyoffive Member Posts: 53


    Hi all

    It’s been 6 1/2 years on tamoxifen-i went through menopause so I was switched to letrozale about 6 months ago. I just had my PET on Monday and I’m stable no active disease and have been stable since diagnosis. I’m doing well enough that I’m getting my knee replaced next month(not cancer related)and am very excited as it impacts my life on a daily basis more so then my cancer. I’m hoping for just as long on this line of treatment.


  • illimae
    illimae Member Posts: 5,650

    I was stable on my 1st line of Herceptin, Perjeta and Tamoxifen for nearly 4 years now. I did move on to a 2nd line a few weeks ago but not because it stopped working. I chose to try a new combo of Herceptin, Xeloda and Tukysa to better treat my brain mets. I retain the option of going back to my 1st line at any time.

  • chicagoan
    chicagoan Member Posts: 1,009

    I have been on my first line of treatment (Ibrance/Letrozole) for 4 years. Hoping to get still more good years on this treatment.

  • Pamela23
    Pamela23 Member Posts: 394

    Illimae--had my first infusion of Zometa 2 days ago with painful side effects and still feel "off" today. Any advice to get ahead of the bone pain and flu like symptoms?

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,048

    I guess I would be considered to be on my first line of treatment. I have been on all three AI’s. The reason I keep switching is not due to progression but simply an attempt to minimize se’s. I’ve never had chemo. Strange but true and NEAD for 9 years

  • illimae
    illimae Member Posts: 5,650

    Pamela, I’ve never had Zometa but I did have some mild bone pain from Xgeva and took generic Claritin (loridadine, maybe?) the day before, day of and day after, never had bone pain again after that.

  • iwillwinthisbattle

    over 7 years on Arimidex, switched to Ibrance about 2 years ago.

  • Strong65
    Strong65 Member Posts: 36

    Stage IV from the start with bone mets. Have been living with it for Six years. There is hope! It has changed my life, but am glad to be here! Have been able to watch my son's turn into wonderful young men....

  • kjones13
    kjones13 Member Posts: 662

    first line of treatment 8 years

  • lynn1234
    lynn1234 Member Posts: 90

    8 years for me too! Bone Mets. I’m still on Herceptin, Arimidex and xgeva.

  • micmel
    micmel Member Posts: 9,974

    bone Mets (5) still on ibrance and anastrazole.5. Years this month!

  • lucia42
    lucia42 Member Posts: 45

    liver and bone mets, 4 years (touch wood) next month

  • forza
    forza Member Posts: 144

    de novo , my left breast

    After mets in my armpit , thyroid , a rib and all sorts of bones ... there’s currently only 1 stubborn bone met left.

    And 20 months on first line treatment (ribociclib / letrozole)

    (Never had an operation / radiation or iv chemo)